Good Days!

Rudy has had two very good days and we are hoping they will continue for a while.  Today is looking like it's going to be extra nice as well.  We are not taking these good days for granted.

Rudy had to get back on pain meds a few days ago.  We have quite a collection of tried and failed meds.  He has hated all of them because taking them means he can't drive his hotrod.  Beyond that, most of them have had awful side effects and didn't completely control the pain.  Luckily CTCA kept working to find a solution.

After a focused visit with our pain management doctor, Dr. Boomsaad, Rudy is on a program that is working great.  It's a three pill combo - a once a day pill for inflammation, a 3x a day pain med, and another pill for break-through pain (which he is thankfully not needing at all).  He also has a cream that he rubs on specific areas.  The cream helps pain, inflammation and chemo-related neuropathy, which we hope he doesn't get.

The pain med name is familiar and scary because you hear it on the news, but it's the lowest possible dose - nothing close to what people might look for on the black market.  A drug dealer would scoff at such a paltry dose.  Rudy's pain is totally under control.  He is not loopy at all.  At most, I'd say he's a little more mellow than usual, but that could also be from the joy of no pain.  Like most pain meds, it can cause some constipation, but we have that under control.  Many of his favorite foods are famous for keeping things moving. :-D

He started by taking the inflammation pill and the cream.  Those seemed to give a good bit of relief, and he hoped to use only them, but it didn't quite do the trick.  He was extremely reluctant to start the main one - the 3x a day pain med.  That's understandable knowing the crazy reactions he's had to a number of prescriptions.  He avoided it until it was obvious he had to get some relief.  First, he went for a long ride in his Challenger, then he came home and popped the pill.  He's so glad he did.  He is feeling like he has a life again (in between naps).

Hopefully, the pain meds won't be necessary for long.  This week, he'll begin the targeted radiation on his chest while continuing the targeted radiation on his pelvic area.  He'll have two back to back radiation treatments every day.  The pelvic radiation will be over early next week.

Rudy is super skinny right now - he had dropped down to 170.  His appetite is back and Operation Pack on the Pounds Before the Next Chemo is underway.  Lots of comfort foods are being consumed and nutritious choices are included as much as possible.  At this point, we are just focusing on what makes him want to eat more.  I don't think anyone would brag about our choices... except for those who have been there done that.  One of his recent favorites was chicken and dumplin's made by Trish.  He said it was perfect - not too rich, not too salty - just right.  One of Rudy's chemo taste changes has to do with foods that are too rich.  Trish also made a sweet potato pie and that was fantastic as well.  I'll bet he's up to at least 175 now!  Maybe even more.

3-15-2015, 8 PM Update - he weighed 179 this evening!

Yesterday, we had a bunch of company.  First, our niece, Kelly and her daughter Eiligh, came down from S.Carolina.  The Johnson siblings - Mike, Beverly, Wanda Kay, and Carrie - spent the afternoon with us.  Rudy group up with them and even though we don't see them often, it's as if no time has passed at all.  It was SUCH a fun day.   Rudy did great through the whole day and completely enjoyed himself.  He was pooped yesterday evening, but it was soooo worth it.

Friends and family have been doing so much to keep our spirits up.  We've gotten wonderful gifts and food and calls and cards and fun newspaper clippings and more.   (Thanks Susan, Carly, Shirley, Pam, Lou and Jeff, Diane, Denise W, and I know I'm forgetting somebody).

Oh  and Denise L and Daniel got Rudy a wonderful package that allows Rudy to watch Braves spring training games on his computer!  Did I mention that already?  It's working great and now that Rudy  FINALLY has a bit of energy, he can actually enjoy it.  Last week, he was too tired to even watch TV.

Phil Niekro signed the 1985 Fanbook that includes a photo of Ricky, Dale and Rudy at a game.
Check out those stylish mustaches!

Also, our niece, Denise, sent us the originals of the Phil Niekro autograph and photo.  Now that we are having a little bit of company, we're finally able to show that off.

It's wonderful to enjoy the magic of ordinary days - that's my current favorite phrase (from a movie title).  It's beautiful outside today.  I hope you can enjoy it as much as we are!

Pain and Nausea at Bay

The last few days have been crazy, but all the crises are under control (for now).  Rudy dealt with unrelenting vomiting and nausea.  He dealt with swallowing being a challenge - it felt like everything was sticking in his throat.  Pills were the worst.  Finally, he dealt with pain that became so unbearable he was unable to function.

Humor gets me through!  I've been chanting the real serenity prayer for days.  I came across this one this morning.  It gave me a good chuckle. 

I *think* we're fine now.  I slept and am able to think and function again.  Rudy is currently not nauseous or in pain.    He has better, longer acting meds for both issues and right now they are working like a charm.  His esophagus issue seems to be getting better.  He has an appointment scheduled to get that checked just in case.  If there is a problem, there are things they can do.

The pain meds are some that are fairly addictive, but it's hoped that he won't need them long - maybe a week at most????  Possibly less.   We hope the chemo (HE DID HAVE CHEMO YESTERDAY!!! :-D ) and targeted radiation will knock the tumor down fast and get it off that nerve.  From what I've seen so far, the pain meds don't seem to make him too loopy.  He seems like himself, just maybe a tad more cheerful.  The cheerful might be more of a result of the lack of pain and nausea.  That's certainly reason enough!  I hope the cheerful effect lasts a long time.

This was me yesterday. 

We'll meet with pain management again next week.  They may even be able to  go in and deaden the nerve to the annoying tumor so that even if it does expand again, it won't make him so miserable.

Yesterday, Terri talked a little more about the immunotherapy.   Rudy will have another scan in 3 weeks to see how he's responding to the current chemo - the Carboplatin-Gemzar regimen.  If it's not a big success, then we'll look at switching to immunotherapy.  That treatment is in the last phases of trial and it's been amazingly successful on many types of cancer.  Rudy's type of cancer is one it's particularly good with.

Maybe immunotherapy will replace chemo one day.

Rudy doesn't seem to be cut out for chemo, so we're really hoping he's being led to immunotherapy for a reason.  We'd love to be one of their success stories!

Birthday Rollercoaster

Apparently, Advil on an empty stomach leads to major trouble for Rudy.  He dealt with unceasing nausea from 2am to around 9am.  At CTCA, they gave him an IV mix that dealt with pain, nausea and fluid loss and now he is almost back to normal.  He's a little nervous about eating yet, but hopefully, he'll be back on track as the day goes on.  His sister, Nancy, baked him a chocolate cake with her famous homemade icing.  Surely he'll be able to sample that sometime later today.  It's one of his favorites.

We're home now and both of us are wiped out.  We'll be turning off the phones and chillin' out for a while.

GOOD NEWS - they did his lab work while at CTCA today and he's on for chemo!!!!  I had the word definitely in that sentence, then took it out.  It seemed like pushing our luck.  We've learned that things can change fast.  One minute we're up.  The next we're down.  I never did care for roller coasters.  There's a movie I see listed often, called The Magic of Ordinary Days.  That title grabbed my attention and I can't hardly stop thinking about it.  We really miss ordinary days.  I know I'm rambling, but I'm so tired that I'm not even going to go back and edit.

CTCA took great care of us, as usual.  Tiffany was our nurse today.  This is our third time with her and she feels like family.  We also had a physicians assistant named Brandy, who was fabulous.  We're becoming close to so many people there.  Daniel, one of the valets, is a real sweetheart.  He took care of us today, too.  Brooke, from Dr. Thompson's office, spotted us near the cafeteria and bolted over to check on how Rudy was doing.  She let us know what all they were doing from Dr. Thompson's office.  Everyone coordinates so well from department to department.  We know full well how rare this is.

My point is, our path is not smooth.  Our journey is not easy.   But having so many wonderful people giving us such love and support along the way makes it bearable.

I'm sure I'm forgetting some details, but it's all I can write for now.  Rudy is already asleep.

Everyone - thank you for your prayers and love!  Hopefully, the rest of his birthday will be nice.

Nausea Solved - Low Potassium

Lesson for the week: If you have an extended bout of vomiting or diarrhea, make sure to replenish those electrolytes - particularly the potassium!

It's quite a conundrum - Vomiting can cause loss of potassium.  Low potassium can cause nausea.  Oral potassium supplements can cause gastric distress.

Rudy was given fluids with potassium Tuesday and within MINUTES, he found relief.  Apparently, the steroid was out of his system, but his potassium had dipped so low that he was continuing to be nauseous and he kept vomiting up anything he tried to eat or drink.

Once the potassium was in, he felt so much better... EXCEPT --- he had thrown up so many times that his back and stomach muscles were killing him.     So after, the fluids and potassium, they gave him some happy juice thru IV.  I can't remember what it was, but it looked like fun.  It didn't make him loopy, but it made him loads of fun.  He was entertaining everybody!  He continued entertaining me well into the evening.  He was so happy to feel good.

We had a really fun nurse.  Her name was Brooke and she was hilarious and cute as a button.  She's expecting her first child in a few months.  We're hoping to see her again when Rudy goes back next week.

Wednesday morning, the happy juice was wearing off and the soreness started returning.  I gave him a long massage and he planned to just lay around and recover.  He acted like he was OK (because he didn't want to worry me), so I took off to run a million errands.  I was halfway through when he called and said the pain was horrible - a 10 on the 1 to 10 scale.  He has never said that.  Rudy is generally tough as nails. I flew over to CTCA and my parents, who live right next door, drove Rudy over.  I went to Dr. Thompson's office and Brooke (not the nurse from Tuesday) set everything up for Rudy to get checked into the Quality of Life Department again.  We feel like we know many of the people who work in that department now.  They are all very nice, but boy, the place was hoppin' last night.  Apparently, there were a lot of emergencies all day and all night.  Everyone looked worn out, but still managed to be super nice and happy to be helping people.  We had yet another standout nurse - Heidi.  CTCA really manages to get the best staff!!!

Rudy got some more happy juice and they set up an appointment with pain management for this morning.  If Rudy's pain was going to continue, we'd need to find some other option besides happy juice.  The crazy thing, when he got up this morning, he kept waiting for the happy juice to wear off and the pain to come back.  We thought it might be a little better, but it was MUCH better.  He can still feel where it hurt, but it's nothing that warrants any kind of pain meds at all.  If you'd seen him yesterday, you'd be as surprised as we are at the improvement.

We've had lots of family help and support and love this week.  Linda and Nancy have dashed over for every appointment.  They helped with picking things up. Carl and Linda brought Rudy chair pads that heat up, heated blankets that plug up into the car, Naproxen for me (my TMJ chose this week to flare up big time), and more.  We've had lots of calls and emails and offers of help, too.  Our niece Carly and her husband Evan even managed to send flowers even though Carly's on a fun trip in Hong Kong with a group of her friends.  Evan stayed home and did a great job getting the flowers.

Carly is all the way on the right.  ♥

We have been on a crazy rollercoaster for pretty much the last week.  We got home around 11pm or so last night.  Our pain management appointment was at 8:15 this morning.  When we got home, we both crashed.  Absolutely crashed.  I think we woke up around 3 pm.  We feel human again.

This whole cancer journey is full of surprises and things that seem to make no sense at all.  Last night, in infusion, they gave him the first dose of happy juice and then we needed to wait a bit to talk more to the doctor and get a second dose of happy juice.  Rudy was no longer in pain thanks to dose number one.    There were many emergencies being dealt with all around us, but we were fine.  We sat in the room and talked and talked and as crazy as it sounds, we were happy and had a really nice evening.

Fluids day 2

Just after midnight another bout of vomiting.

It was time for a Zofran, but he said he didn't want to take it anymore because it made him sick

5am another bout of vomiting.  At what point does he get put in the hospital?

6:45am another bout of vomiting

Spent day in infusion room again,  More saline – 1 ½ bags.   Steroid.  Pepcid AC thru IV and two bags of Ativan, which made him talk absolute nonsense.  He thought he was installing glass in the infusion room.

He came home and slept and talked gibberish for a while.  Then he at a tiny bit of jello.  He vomited shortly after – around 6:30.  He sipped water a little while later then vomited again.

Today, some wondered if the vomiting was being caused by the Fentanyl 50mcg.  No one ever really did more than wonder because he put the patch on Friday around 1 and didn’t begin vomiting til early Sunday morning.  

I looked up Fentanyl and vomiting  this evening and from what I read, it’s a distinct possibility that’s what’s causing the major vomiting.  I called the after-hours number and Dr Menninberger said it would be fine to remove the patch and we’d soon know if that’s what was causing the vomiting.  I also wonder – the patch really took care of the pain, but was the 50 too strong to start off with?

Removed patch at 11pm

Vomited 11:20.  It'll take 12 or so hours for the Fentanyl to get out of his system.

Fentanyl

Great day.  No pain thanks to new pain patch they prescribed for Rudy yesterday – Fentanyl

Knock on wood, but it looks like this may be just the ticket for now.  Hopefully, soon, the tumor will begin shrinking and meds can be reduced.

He slept last night.  He seemed relaxed and comfortable and seems good this morning, too.  Woo Hoo!

Bedtime – he began to feel a tiny bit funny in his tummy – he SHOULD have taken Zofran!

So many have mentioned that they'd like to visit. As great as it would be to see friends and family this weekend, Rudy really just wants to recuperate from yesterday and relax as much as possible while he sees how the long list of chemo side effects plays out. Hopefully, the effects won't be too bad - especially since this is just his first round.